MS: Many Stories – From the MStranslate Community

As there is no universal experience of living with multiple sclerosis (MS), MStranslate has always placed a strong focus on sharing personal experiences of living with the condition.  This commitment has lead to the development of “MS: Many Stories“, which will be an ongoing series where members of the MStranslate community openly and honestly share their personal journey.

In our first feature we meet Toni, who talks about the important role the internet has played in helping reduce the isolation and uncertainty often experienced by people living with MS.

The Unknown Descent into MS: My Most Frightening Symptom 

By Toni

The descent into Multiple Sclerosis is often heavily peppered with events and impacts on your body that are beyond comprehension and are indescribable to others. They come and go, leaving you to think that either you were imagining it, or, it was the impact of a fleeting illness that you no longer need to be concerned about. This decline into MS is troubling, lonely and distressing. And lengthy. It can take a very long time to reach diagnosis and begin to absorb its significance.

Observing the communication on well-administered online MS sites can provide an insight into the experience of MS and the descent into it, in a way that is raw and immediate. It can provide perspectives that are difficult to learn of through other very-controlled avenues. You can discover the highs and lows of contributor experiences of medications, treatments and symptoms, and so much more. Reading comments from unknown, international contributors can give a sense of membership of an exclusive insider perspective.

The impact of this chronic, incurable neurological condition is different for everyone, and very difficult for others to understand. I have accepted that I experienced a wide range of unnamed, troubling effects of differing impact on my function before I was ever diagnosed. I had become silent about this, having learned that health practitioners saw nothing to be investigated in my reports.

When I read a post by an international online contributor that rang a sad, sickening bell, I just knew a most frightening symptom had, for the first time, been recognised.

The event reported on this online page seemed unremarkable, innocuous, harmless even. The contributor described experiencing a troubling occurrence when answering the telephone. He described that after engaging in a telephone call, he found that he could remember answering the call, who called and that is all. He could not recall the content of the conversation, plans made or the end of the call. Disconnecting the call had clearly occurred but was not remembered.

This description of a gap in awareness was haunting for me. For the contributor, it prompted a host of reply posts from others recognising this experience in themselves. To realise that this touched many was an awakening.  A flood of memories washed over me, as I recalled the experiences in an unnerving and upsettingly familiar way.

It occurred in downtown Abbotsford, at my house. I was feeling unwell and decided that I would go to purchase food at the local modern-day ‘milk bar’, that being the petrol station/mini-supermarket nearby. I can’t explain why I even chose to go there, as it was not my preferred shop for food. I walked there, crossing a major road. I entered the fluorescently lit store that felt almost clinical and commenced selecting items. I selected more items than my usual one or two, and attended the register to pay. I noted carefully that I needed to collate the plastic bag handles cautiously as it was more than the one bag that I usually would have carried. With a nod of acknowledgement from the staff member, I set out on the walk home, or I intended to.  The next I knew, I was upstairs in the kitchen at home, unpacking, wondering where many of my purchased items had gone! The shock became a real fright when I realised that not only was I missing parts of my shopping, when clearly I recalled the items I took to the register, paid for, and carefully carried away, but an acknowledgement that I had no idea where they could be. Where was my missing shopping? I know I left the store with them in the bags. And then came the realisation that I had no idea of how I got home. How did I cross the very busy road? – Did I sensibly walk to the lights at the pedestrian crossing? Did I dare to cross the road by dashing through the speeding cars, buses, taxis, trucks and bikes?  Surely I would recall the tooting of horns and screeching of tyres if I had tried that. Maybe, I hoped optimistically, maybe I gave it to the local homeless man? But no, he only wanders around at night. So that must not have happened.

This sickening knowledge of a gap in my awareness has plagued me ever since. It could potentially have seen me encounter danger. Maybe it did? I never discovered what happened, or why, or how.

The online contributor to the MS page and the host of responses confirmed to me that this ‘break in awareness’ is known to, and experienced by, other people with MS.  Over time I had considered the experience as potentially contributing to a psychological condition. Nothing else ever supported this consideration and it remained a mystery. That was, until I had lived with the diagnosis of MS and its trials and discovered the similar experiences of many others diagnosed with MS and by reading the online MS page posts.

If you would like to contribute to MS: Many Stories, please don’t hesitate to contact us here.